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Howdy Family!

Well I went to my "pre-op" today and I don't have a date yet because they're wanting me to have another colonoscopy, I'm having one day after tomorrow .. so at least I don't have to wait long. I'm frustrated because the fooking surgeon said after the barium follow through that we'd hash out the specs on the surgery ... and that didn't happen.

He showed me the scans they did, both the CT and BFT which all have been done in the last few weeks. Then he mentioned that he had talked to my GI doctor and she *thinks*, it could be lymphoma and *not* Crohns ..


I swear .. I never understood why people snapped and just lose it and go on a rampage.

Now I know why.

Thanks for reading, just needed to get that off my chest. Thursday will help provide hopefully more answers. Biopsy results will be back early next week.
Thanks Jed and Jeff. I'm not worried about it, if it turns out to be cancer then I'll deal with it. I was sort of shocked though because in the 2 + years I've been dealing with what I've been told by 3 GI's that it is Crohns but then they seem to almost have an inner fight with themselves that they are making the correct diagnosis. I'm just more stunned then anything that it was even brought up. It's not something I've really ever considered except when I first got ill but no doctors have ever thought it was a remote possibility until now.

I really thought I was making progress and my team of doctors was coming to a real concrete consensus on my care but it seems like every time I take a step forward, there end up being 3 steps back. Just like everyone who is ill with something I just want answers, I don't care what the answer is, I have been battling this for awhile now but it's hard to decide on a strategy for your enemy when you don't know who you are fighting.

I like the group of doctors I'm working with right now _a lot_ though and I have faith in them, unfortunately we had to basically start from scratch even with the pile of records of my previous care and tests. They haven't seen the whole picture quite yet and of course wonder why I'm not working, obviously they haven't been chronically ill. I'm now left to wonder if they'll let me die while they're trying to figure out what the fsck is wrong, I don't mean to say that I'm going to die or anything ( if I were to say that, that would make me someone seeking pity, that's not something that's in my mode of operation ) but I do tend to be a pessimist and look at the worst case scenario of any situation. Whatever is wrong is not normal and I can't live like this ugh! I just wish someone would make a concrete decision about all of this and help put together a plan of action so I can get my life back, until I'm told differently I'm sticking with the CD diagnosis, I will not let CD or anything else define who I am but I want to get my old younger, healthier self back as much as I can.

Thanks for letting me vent.

My Butt Hurts

Vent away Drew - that's what we are here for.
It's hard to say "don't worry until you have the results back", but really that's what I would say to you.
You know that diagnosis is always crazy for Crohnies - they can never tell what they are looking at half the time.
Good luck on Thursday - I'm thinkin' good thoughts for you!
That is really perplexing. My doctors usually aren't real good at explaining to me what is going on. But with this kind of situation, I'd demand a flow chart or something as to how this all went down. And I don't mean to be flippant in the face of such a serious situation. My thoughts and prayers are with you.
Drew, any answers yet?

You've been on Humira for about 6 months. I would think that wouldn't be long enough for a lymphoma to develop if that was the cause. But for those of us on Humira, this would be a disturbing development for all of us. The chances of getting this are supposed to be rare. I sure hope you do not have this.


ele mental leprechaun
Drew this is crazy!

Your own doctor had sense to keep her thoughts to herself until she knows what she is dealing with i.e PROOF!

This tw*t is unbelievable! Where does he get off blabbing another persons thoughts who obviously wasnt willing to raise the subject?

This is way out in the realms of unprofessional Drew messing you around like that emotionally.

I hope to heck you will put in a complaint down the line once you know what is going on.

I truly hope from the bottom of my heart that things are clearly proven crohns or IBD etc and nothing sinister.

Have been keeping you close in my thoughts since I read this. Was just too stunned to post til now.

Hang in there honey. ((hugs))
@Sojourn, I've been on Humira since late October so not quite 6 months.

I had a rush colonoscopy on Thursday and they found no "obvious" signs .. but took about 15 biopsies of around the TI which was swollen apparently. It was interesting cause they gave me a ton of drugs to try and knock me out but I was awake during the whole procedure. Weird looking at my insides indeed.

Tuesday they're supposed to have the pathology results.

I've decided I want out of the computer business, I need to be a doctor so I can tell people I have no idea what's wrong with them, that I don't know how to treat them and put them through hell, sounds like a smashing time.
drew_wymore said:
Tuesday they're supposed to have the pathology results.
My diagnosis of Crohn's only after the pathology results. Before that I had a radiologist say that it was highly suspicious of cancer, the doc that found the lump in my belly said it didn't look to good for me, the dr. famous GI that did my colonoscopy told me to go home and get ready for the worst. Pathology report surprised us all.

I spent a lot of time googling "Granuloma mimicking cancer" and finding out about all the things that look like it might be cancer but aren't.

I know of one other person who was eventually diagnosed with Crohn's that had what looked to be cancer. He was a complete basket case (as was I) until his pathology came in.

I've decided I want out of the computer business, I need to be a doctor so I can tell people I have no idea what's wrong with them, that I don't know how to treat them and put them through hell, sounds like a smashing time.
LOLOLOL Alternate telling them that you have no idea with telling them, "This looks like cancer, sarcoidosis, irreversible liver failure,...go home and relax until pathology comes back."
I'm not scared. I just want answers. I've been through 3 GI's and a couple of GP's in the past 2 years, one GP was only because my regular doc wasn't available at the time I needed to be seen, otherwise I've had continuity with him.

Since August of 2007 I've been told I have Crohn's then I was told it was Gastroparesis, then Crohn's again, then the GI I was seeing gave up on me and wouldn't return my calls or schedule appt's with me anymore. I took a couple months of just seeing how I would do with no treatment and that didn't go over very well so I asked my GP for a referral to the University I'm at now and I've been with this group since August of 2008. I first saw a regular old GI who, after a pill cam and prior medical records decided on Crohn's again, and started me on the Humira and transferred me to a Crohn's specialist at the same clinic who I've met with only once and she scheduled me with the surgeon who told me about their discussion and reviewing the records from my visits with them at the Uni and whatever prior medical records they received from my previous GI.

I'm the past month I've had the colonoscopy, labs a couple times, a CT enterography and a Barium Follow Through. So I've repeated basically every test at least twice now and they can't come to a consensus.

Part of me wants to blame myself for not starting off with this group of doctors for continuity of care reasons but at the same time it shouldn't matter who I see. If anything, at this point I'm angry because it feels as though the only time I'm taken seriously is when I'm so sick or in pain that I end up in the ER and I shouldn't have to reach that point for someone to take me seriously. I'm not at my worst but I'm not at my best either right now and part of me wants to stop the Humira so I start getting seriously ill again so these guys will get off their asses and start doing something that provides results.

I hate even complaining about this because I know there are folks here who are far worse off then I am or have been dealing with this damn disease for far longer then I have, or they've been fighting for a diagnosis like me and it all just sucks really bad.

If it does turn out to be lymphoma, the good news is that it would more then likely be non hodgkins lymphoma which is very treatable. If it's Crohns then I'm no worse off then I was before, I just want them to decide on something, stick to the diagnosis and get me some relief!

Thank you all for your support, concern, good vibes and just listening to me. I appreciate every one of you so very much.
I didn't realize they're saying it could be one or the other, crohn's or lymphoma. If it's one or the other that wouldn't be as bad as it being both. My GI warned me that some who take Humira have developed lymphoma's so that's the first thing that came to my mind.

I guess I missed that part of your original post. I'm still amazed at those of you that have a "team" of doctors working with you. I've never seen any kind of a group effort in treating my condition except when I had my surgery and the surgeon and the GI worked together.
blah i hope this all gets figured out quickly for you.
that really is quite obnoxious. if you dont know whats wrong then you cant do anything to make it better and that sucks a big one
Got the results "non specific inflammation" .. well duh that's been the story all along. So at least it's not the big C I have to worry about.
I'm exactly at square one again Kim. She asked if I was still considering surgery with the surgeon. I said, well we have 2 colonoscopies showing the exact same thing 18 months apart, so it's not getting worse but despite all the drugs we've tried nothing but Pred has made me feel better and it's not a long term solution so provided neither she (my actual GI doc) and the surgeon had no issues with it then I'd like to move forward with surgery. Since nobody can seem to explain the inflammation or it's cause with complete certainty then surgery will provide at least some relief and perhaps the opportunity for a pathologist to thoroughly test the parts they remove to see if we can determine what the hell is wrong with my body.

My Butt Hurts

Well, considering that you *thought* you were going for your pre-op appointment when they threw the C into question, I guess you would continue on the same route you were about to take. Maybe surgery is your answer, since you can't seem to find an answer after 2 years.
Congrats on no C!
Forgive me if this was mentioned Drew, but is the surgery a resection, some sort of ostomy, or something else?

I'm almost at the end of the medicinal line myself. The only one left that I refuse to try due to the risk/benefit ratio being erratic is Tysabri, that is my own personal choice, but Id rather not risk the whole fatal brain thing, if it's alright with my colon...
BWS1982 said:
Forgive me if this was mentioned Drew, but is the surgery a resection, some sort of ostomy, or something else?

I'm almost at the end of the medicinal line myself. The only one left that I refuse to try due to the risk/benefit ratio being erratic is Tysabri, that is my own personal choice, but Id rather not risk the whole fatal brain thing, if it's alright with my colon...
It's supposed to be a simple resection Benson. The area affected is basically right at the TI and a little bit of intestine above it. Nothing below it, the Cecum looks good.

My GI doc emailed this morning and agrees that surgery is the correct route at this point given that Humira isn't working like it should. So she's working on getting me a follow up with the surgeon.
Good to hear no cancer. It sounds like your resection will be similar to the one I had. They called it a lap-right-hemicolectomy because it was laproscopic and removed half of my colon on the right side. Hopefully they won't have to take out as much of yours. I wonder if they will continue you on Humira after the surgery or try something else. I forget if you've done Remicade.
I left a voicemail for the surgeon on Friday and haven't heard back yet ugh. I'm actually investigating whether or not its Crohns now too. I looked up the various causes of inflammation of the intestine over the weekend and there aren't very many, I'd wager to say 90% have already been ruled out in my case. I started putting some things together medically in my head with something I read and I'm going to request a specific blood test to see if I'm right.

I found something called Selective IgA deficiency and it seems like a possible culprit. It's part of the immune system that helps protect the mucousal surfaces of the body including the GI tract. I've had 2 colonoscopies that show inflammation 18 months apart even though I've been blasted with 7 months worth of steroids and then Humira on top of it and I'm still not as well as I should be.

IgA fits only because the presentation of asthma, ear infections (I had TONS as a kid and still get them to this day), pneumonia which they never figured out the culprit and assumed it was staph etc etc. My reading also showed it can affect the GI tract in similar ways to Crohns/UC and also show up as auto-immune related diseases and can even be part of RA. No cure, but I'd have a concrete answer and a possible route for treatment which is basically courses upon courses of anti-biotics. I had always assumed my constant URI issues were because I am a smoker but even when I quit I had issues.

So we'll see and I'll keep everyone updated.
Drew, did your research indicate any signs that one could have the same IgA issues and have NO immune issues? before Crohns I was literally unscathed in virtually all immune issues, nearly never got sick or infected. Just wondering because I was also resistant to lots of oral (but not IV) steroids for months, had Remicade AND Cimzia both fail me, and if I'm looking at a possible surgery too, I want all the potentials laid out clearly. Thanks, and good luck, either way, answers should bring resolution.